Jane: Alzheimer's Canyon: The Book!

 Hello all!

After Sky died, I turned this blog into a book knowing it was important to share his words and our story with a larger audience. I found a publisher, and Alzheimer's Canyon, the book, is coming this November!

Please share this info with your local bookstore, and your local library. Spread the word!

I'm happy to come for a reading as well. Just let me know.

Here's the link where you can read more:

https://www.rootstockpublishing.com/rootstock-books/alzheimers-canyon

Thanks for being there. It meant so much to Sky.

Jane: The End is a Beginning

And, just like that, it’s over.

After being completely “normal,” entertaining the staff and residents with his songs, humor and antics, Sky was unable to bear weight on his left leg on Monday, February 15. X-rays showed no break in hip or pelvis. Doctor and staff were puzzled. He continued to not be able to bear weight, and cried out in pain whenever he was moved.

On Tuesday afternoon, I was granted permission for a “compassionate care visit” — my first time to be with Sky up close and personal for almost a year. On Wednesday morning, I arrived at his facility, I gowned, gloved and masked and was taken to his room where he sat uncomfortably in a wheelchair. I spent so much time hugging and kissing him, looking into his eyes. He was mostly unresponsive, but later “came to,” called me by name, and said, “I know what I’m ready for.” “The next world?” I asked. “Yes. I just want to rest.” Then he went to bed for a nap, and he fell asleep while we held hands.

An enormous burden was lifted. I was allowed to visit him whenever I wanted.

I returned on Friday to watch his physical therapy appointment as the therapist worked his limbs and tested his strength to try and get him to stand — not to walk, but to be able to easily transfer from bed to chair and back again without using the Hoyer lift. He cried out “no!” and was in pain, and he physically tried to resist her moving certain body parts. Eyes closed, hands clenched. He was not a happy camper.

Later, when we were alone, he opened his eyes, looked at me, and smiled his sweet smile in recognition, then closed his eyes. My plan was to return on Monday for his next PT appointment.

Saturday evening I got a call from the nurse. He had aspirated some liquids, and seemed to be losing his ability to swallow. Was it OK for him to have a pureed diet? How about no diet? was my reply. Sky’s greatest fear was that people would try to feed him when he did not want to be fed. I suggested stopping food altogether (they did)… then I asked, “Should I come in the morning?”

“Yes,” was the reply.

So Sunday morning, I packed a bag, left out enough food and water for my cats, and headed south to his facility. When would I be back home?

When I arrived, his breathing was very labored and I was sure he would die any minute. His out-of-state sisters all spoke their goodbyes to him with my phone held to his ear, and our kids — who live locally — arrived for their visits. Visiting is awkward with gowns, masks and gloves — damn this pandemic — so we didn’t really have the family-hang-out time we would have had without Covid-19.

Sunday evening around six, he had about an hour of fairly lucid talking and singing — though we could only understand about a quarter of what he said his voice was so soft, and Dana and I are not that great at “Name that Tune.” At one point he said, “The end is near.” Dana asked, “How long?” Sky replied, “Four or five.” Though when Dana pressed him, he could not say four or five what. We let it be. He closed his eyes, and drifted away. Dana went home, and the staff brought in a cot for me to spend the night.

Monday was a day of vigil, phone calls, texts and emails to friends and family. I wanted to break the news that Sky was dying and not have people learn that he died out of nowhere. It was bittersweet. It was hard to explain to people that I was both very happy and very sad, all at the same time. Sky remained unresponsive, but not in pain, throughout the day and night.

Monday night into the wee hours of Tuesday (today)were a struggle for me while Sky “slept” along peacefully, thanks to the tender care of the staff. It was hard for me to sleep listening to his breaths, wondering if the next one would come or not. I managed only three hours, and finally got up and sat by his side until dawn.

I steeled myself for another long day of vigil as his condition, his breathing, had not changed in 36 hours. I was exhausted, and I wondered how long this could go on, how long I could go on.

The staff got me a delicious breakfast, and I was eating as the aides were bathing and changing him. He was on his side facing me, and it looked like he wasn’t breathing… but then I saw a small breath. The women settled him onto his back, and then called to me.

He was not breathing, a blank look on his face. We all stared in shock, he took a tiny breath, and then was still.

My beloved and best friend is gone from this earth. I will miss him dearly. But I am so glad this is over for him… and me.

Thank you all for following along on our journey, This blog meant the world to Sky.

Jane: The Light Grows

It is almost February 2nd, halfway between the Winter Solstice and the Spring Equinox. It was five below zero (F) this morning when I got up, and now it has warmed to a balmy six above. The sun is out, not a cloud in the sky, and no wind. I spent a little time outside, and with enough clothes on, it was actually pleasant. I watch the people out ice fishing on the lake -- some have been out since dawn -- and know that they are more rugged than I am. I like winter, but I am thrilled that the days are getting longer. The sun warms my house, and my spirit.

Sky (and most of the staff and residents of his facility) has received both doses of the vaccine. No side effects have been reported to me. That's good. But the "side effect" that I wait for is a change in the visiting policy. No word on that yet.

I continue with Zoom "visits" with Sky, and the occasional phone call when he wants to talk with me. At the scheduled Zooms, I never know what will happen. One day he was "hiking" and had to get going, and the staff member graciously held the tablet next to Sky while he walked up and down the halls. Sky and I didn't speak much, but the staff member and I did, and I told him tales about Sky and his long distance hiking experiences. Although I wasn't able to interact directly with Sky, I was pleased that the staff member knew a little more about him, and who he had been, and that perhaps that would help in their day-to-day interactions.

Sky continues to fall periodically, and hurt himself in other ways. When he does that, the nurse is required to call and tell me. One time he hurt himself because he was on his hands and knees "fixing" the toilet. Another time he was on his hands and knees escaping a war. But whenever the nurse calls (with the calls aways beginning, "It's not an emergency!"), she then goes on to tell me something Sky did or said recently that they found endearing.

"Your man is so funny! We just love him! One time when it was National Grandparents' Day, he said, 'Been there, done that, it should be National Masturbation Day!' and we all burst out laughing. (OK, so Sky used to be a sex educator... this didn't surprise me....) Another time she said, "Sky just came around the corner and whispered to me, 'We should smoke some pot!'" (I could only roll my eyes and comment, "And he probably doesn't even know that it's not illegal anymore.")

I get reports of the calls he has with his daughter, Dana, and his sister, Mary. They find the same things as I do -- sometimes he's talkative, sometimes he's not, sometimes he can lift his head to look at the screen, sometimes he can't, sometimes he can answer questions, sometimes he can't, sometimes he can finish a thought, sometimes he can't.

But we all agree that we can still see Sky there -- a tip of the head, a shrug of the shoulder, a chuckle, a song, a smile, a brief flitter of recognition when he can look at the screen. When he was first diagnosed, he was so worried about losing himself, but that hasn't happened. Sky is still there -- it's just that sometimes he can't communicate that in words.

My garden seeds arrived a few days ago, and I've got a big bag of potting soil ready to go. It's too soon to plant the seeds, and I must be patient. But with the growing light, and the passage of time, I know the day will come when I can nestle those seeds in the soil. Then I will, once again, have to be patient as I wait for the plants to emerge. Those of you who know me well, know that patience is not one of my virtues, so this is good practice for me.

Maybe with spring, and sprouting seeds, I will finally be able to visit Sky? In the meantime, I stay snug at home, grateful for the growing light.

Jane: A Bittersweet Christmas Eve

Thirty-five years ago today I packed up most of my belongings and put them in storage. Into my car went some clothes, a few favorite books, and my pillow along with my four cats, Sage, Fern, Charlotte and Violet (none of whom was too pleased). We headed north. Two hours later I arrived at my new home, Frog Run Farm, a commune in the Northeast Kingdom of Vermont, where Sky lived. (Sage howled the whole way.)

Sky met me in the dooryard. We took the cats to the dairy barn, their new home. We loaded my clothes, books and pillow into two backpacks, put them on, and began the one-mile trek uphill into the woods to our new home. For the previous two months, we had built a small, one-room cabin in those woods with a sleeping loft, wood stove, and outhouse. It was my first adventure in house building. Before that, I was lucky to be able to figure out how to install a shelf.

It was the first day of my new life -- living with Sky. We had only been together for the previous ten months, but we both knew it was time to take the next step. With a light snow falling -- as it is supposed to do in Vermont at Christmas -- we settled in for the night. In bed, we held hands and sang Christmas carols, a tradition we would uphold for the next thirty-four years.

Thirty-four Christmas Eves and Christmas Days. First Dana came along, and then Sayer. We did all kinds of different things to celebrate the holiday -- there are plenty of stories to tell. When Dana was almost two, we started the tradition of lighting one more candle every day until Christmas Eve. Dana loved the candles, but mostly she loved putting out the candles with the snifter. That tradition has remained --  wherever Sky and I have been living during the month of December.

This year is different. Dana and I visited with Sky via Zoom this morning. He was pretty out-of-it, seemed sleepy, but with a staff member's urging, finally focused on the computer and our faces.

"You're alive!" he exclaimed. "You're alive!"

"Yup," Dana and I both answered. "Did you think we were dead?"

"Yes, yes! You were in a terrible accident, Sayer, too. You were all dead. You're not dead?"

"No, we're fine. Sayer, too. I guess this is the best Christmas present ever!"

Sky smiled.

"Well, at least he knows who we are," Dana and I agreed.

Tonight it is 50 degrees and raining. But no matter the weather, I light the twenty-four candles and pour myself a glass of wine. I may or may be able to bring myself to sing any Christmas carols once I'm in bed. I am sad beyond belief, yet so grateful that Sky is getting excellent care -- and that he knows that we are alive.

Merry Christmas to all who celebrate. And blessings on all of you in the New Year. May I be able to touch Sky again. And then we will sing.

Jane: Thankful

I sit here at my desk looking out on yet another gray November day. The clouds hang heavy, there are scattered rain showers, and the lake, for once, is calm. Before too long I'll go out for a walk, warm enough to be pleasant. Yesterday I was also sitting here at my desk, and I watched a fog bank roll in just as the sun was setting -- peeking out behind clouds only to disappear. That's November for you.

It's quiet. Just like it was yesterday, and the day before, and the day before that. I live alone now, the first time in over 35 years. The only sounds I hear (when I'm not watching Netflix or listening to music) are a periodic cat meow, squeak or purr, birds chirping at the feeder, an occasional passing vehicle, and the wind in the trees. I am as close as I can be to the natural world without actually being outside. I miss being outside. I miss working in the garden, swimming, kayaking, and having the windows open all the time. But I am very thankful for my strong, secure, and warm house.

Yesterday when the fog bank rolled in, I was having a Zoom call with Sky. With the escalating cases of Covid here in Vermont, we're back on lockdown, and Sky's facility cancelled all in-person visits. This was our second Zoom visit, and how much better they are than in-person visits! What a gift that I don't have to decide whether or not to make the trek to struggle with yet another uncomfortable, painful and frustrating in-person visit. On Zoom, Sky can actually see me, and I him. He's in the secure space of his own room, door closed, quiet and peaceful. A staff member is with him, to handle the technology, and answer any questions. Sky can end the call whenever he wants to. I can see his room. It feels much less stressful for both of us.

He didn't say much yesterday. He didn't realize/remember that it was Thanksgiving, despite having just had the big holiday meal with the other residents. Sky was never a big Thanksgiving fan, though he always liked to eat what was served. Then when I was the minister in Derby Line, he decided the best way to celebrate the holiday was to offer a free meal to anyone who wanted one. He gathered volunteers, and procured donated food from stores and farmers. The ladies of the church got out the white tablecloths and festive china and set the tables. The children in Sunday School made placemats, and everyone cooked. The first year we served 35 people, and six years later, 225. It was great. When I reminded him of all that, he just smiled, nodded.

"You're very quiet today," I said.

"I just want to look at you," he replied.

And for that I am extraordinarily thankful.

There is so much to be thankful for. I am thankful for Zoom. I am thankful for the caring staff who watch over Sky for me. I am thankful for the love and support of my family and friends. I am thankful for Tubby and Pogo, my feline housemates. I am thankful for all the natural world has to offer -- sun and clouds, wind and rain, snow and trees, wild food and good soil to grow more. Chickadees and squirrels, geese and ducks, worms and ladybugs, spiders and frogs. Rocks and mountains, lakes and rivers, bogs and oceans. 

Even though these strange times keep us from doing so many things we would love to do, we can be thankful for the simple pleasures -- a hot cup of coffee or tea, the peacefulness of a snowfall, snuggles with a pet, a good book, a phone call with a friend.

Or take some advice from Tubby and Pogo -- have a nap!

Hang in there, everyone.

Jane: The Change of Seasons

It's blustery and raining today with temperatures dropping from the 60s to the 40s. Prediction is that 40s it will be from here on out. No more warm weather reprieves like yesterday when it was in the 70s. Time to turn inward, and stay inside. There are still some holdouts in the garden -- carrots, cabbage, kale, spinach, parsley, peas -- but everything else has died and been pulled to be added to the compost pile. Life and death. 

I visited Sky yesterday after a month's absence. There were only two phone calls in that time, brief calls, where Sky wanted to tell me what he was doing ("Just finished tiling the bathroom! It looks great!" "I've been baking bread with the kitchen ladies and just bought a new grill.") and then, abruptly, he says he has to go. All I can do is listen to his voice -- which sounds completely "normal" -- so I am confused for a moment. Maybe he doesn't have dementia? Wait, no. He does. And then he is gone.

The staff calls me every time he "falls" (or places himself on the floor) which is happening with greater frequency. They're not really falls though -- he's just busy doing different things -- like a "project" that involved him crawling across the floor, or sleeping on the floor in someone else's room. I still wonder what it's like to be him.

Yesterday he hardly spoke, mainly looked at the floor, and muttered from time-to-time. He said Gary Oldman and Sean Connery were there. He kept repeating the words for ice cream (morozhenoye) and please (pozhaluysta) in Russian. He said, "There is good potential if I have enough energy to follow them." Though when I asked what he meant, he did not respond, just like he did not respond when I told him about the nice weather, or about a friend who had died, or that we took the boats in for the winter.

Once again, I am faced with the decision of whether or not to keep visiting him. It is painful for me, but I think it would be painful to not see him. So much pain all around.

The changing seasons also mark the time of year when we remember our dead. There has been a lot of death recently among my friends and their loved ones. Cancer, in particular, is taking too many people too soon. We honor their lives by remembering them, the gifts they brought to the world, the challenges they faced. We look our own mortality in the eye. And then we go inward to await spring's rebirth.

Between the virus and the election, there is a lot of stress and anxiety out there -- and in here. I grieve the end of the garden season, the lake season, the boating season. I grieve the loss of friends and colleagues. I grieve the loss of the Sky I've known and loved for 35+ years.

Thanks for sharing in our journey.

This is what Sky looked like yesterday:

Jane: More Musings

I've been re-reading my mother's journals. She started them five weeks after my father died in 1994. It seems as though she wanted someone/something to talk to. My father was quite sick the last eight years of his life which put a dent into the busy social and travel life they had had over their years together. This frustrated my mother immensely. She was not a good caregiver, and seemed to resent my father's decline.  She gradually had to be in charge of all aspects of their life -- no longer did my father make the travel reservations, get the oil changed in the car, or host the cocktail parties. Fortunately, she was a competent woman who was not afraid to take on the extra responsibilities beyond her life as a mother and a homemaker, but she clearly wished things could be otherwise.

Her journals mostly chronicled who she went out to eat with, where, and what foods she indulged in, activities of her children and grandchildren, and her concerns about her own health. And a whole lot about how lonely she was, and how much she missed the "good times" with my father. She was a very social person, so perhaps living alone after all those years -- 54 -- was just too much of a shock.

I think about her loneliness because I don't feel lonely without Sky. I feel sad, certainly. I feel relieved that I no longer have to care for him 24/7. I find peace in knowing that I can come and go as I please, I can eat or sleep when I want to, and stay up late watching too much Netflix.

But I do miss our easy companionship. I miss talking with him -- we used to talk about everything from current events, to what to plant in the garden, to personal feelings, to our careers, to our children, to where we were going to travel next. Everything under the sun. Now when I visit him he doesn't talk WITH me, he talks AT me, and he talks less and less all the time. He is having a hard time finishing his sentences, even his hallucinatory ones. The subject changes from one sentence to the next. I take notes, hoping to find some meaning in what he says, but I generally don't find it.

He also doesn't respond to what I say either. I tell him about the garden, or something our kids or our cats have done, and there's just a blank look on his face. The next thing that comes out of his mouth has nothing to do with what I just said. So I mostly don't talk anymore -- I listen, and I hope, and I just look at him and wonder what it's like to be him.

I've decided to take a break from visiting. I don't think Sky is getting anything out of it -- on the contrary, I think the visits bother him. The last few times he has asked to go back inside long before our half-hour was up. I've made a plan with the social worker, and when she sees him, she's going to ask him if he'd like to talk with me, and if he does, she'll set up a phone call. We'll see how it goes. Cooler weather is changing the nature of the outside visits anyway, so this may be for the best.

So I keep living my life, wondering how the pandemic will play out, how the election will play out, how the climate crisis will play out, and whether I'll have enough canning jars and lids to deal with the garden abundance. My thoughts always turn to Sky off and on throughout the day. And here's one thought that comes to mind often: a few visits ago, he said this: "I have a one-way ticket out of here, but it runs out in March or April." Is that when he will die? None of us can know. So I'll keep on taking things one day at a time.

Jane: Musings

Four years ago this month, Sky was diagnosed with "probable early stage Alzheimer's disease." Coincidentally, the visit with the neurologist who gave us the diagnosis came a day before a long-planned trip to Europe. Two weeks abroad seemed like a fabulous idea at this critical moment. We would be together without obligation, and would have all the time in the world to process this news. We had no specific itinerary, no reservations other than the plane over and back. So we wandered from Brussels to Amsterdam to Paris and back to Brussels.

In August, much of western Europe goes on vacation. Many shops are closed, hotels as well, and no one is in a city if they have to be. The trains were full, but the streets and cafes and hotels were nearly empty. We had the cities to ourselves. We wandered and explored, stopped at a cafe if we were hungry or thirsty, and took long naps every afternoon.

And we talked. And we cried. And we talked some more.

Sky was most afraid of losing himself. Or His Self. His Being. His Essence. That he would become an empty shell, and that he wouldn't know who he was.

But what is our Self? It's more than our identity, what we do and don't do, what we enjoy and what we dislike, who we choose to love. Yes, Sky would eventually lose his ability to read, do carpentry work, harness a team of horses, garden, drive a boat and a car, play the piano, even ride his bike. So many things that comprised his life would disappear. His identity as a competent individual who cared for himself and his family would evolve into someone who participates in the world through his hallucinations.

But his Being and his Essence are still there. They may be hard to find under the layers of increasing physical frailty and the random, wandering thoughts that come out of his mouth. But when he manages to lift his head enough to look me in the eye, I see his Essence there, his sparkle, his thoughtfulness, his care. I may only see it for a split second 'til his head drops again, but I know it's there.

Visiting Sky remains challenging for me. I have seen him three times since that first, horrible visit. It's excruciating not to be able to touch him. If I could, I would spend the entire allotted 30 minutes just holding him.  But that's not allowed, so I have to do the second best -- connect with him through my eyes and my ears (not my smile because it's hiding behind my mask). His words are random, sometimes making "sense"... mostly not. I bring a paper and pen now and take notes. As his physical therapist recently said to me, "His hallucinations are really interesting!" Yes, they are, but it makes me wonder what life is like for him in this new and different world. Does he still worry about losing His Self? Does he even care? 

I will never know. But from what I can see, Sky is truly living in the moment. I suspect he no longer is concerned about losing himself because now he IS himself, his pure Essence available for all to see -- all of the time. And for that I am grateful.

Jane: The Visit

Ten days ago, the governor of Vermont lifted the restrictions on visits to residents of elder care facilities. The state Department of Health issued guidelines for visits and, based on that, Sky's facility issued their own -- outdoors only, six foot distance, everyone in masks, and the visitors questioned about possible symptoms of the virus and had their temperature taken. Visits must be scheduled, only two visitors per resident, only one visit per week, maximum 30-45 minutes. No exchange of gifts, obviously no touching.

I wasn't sure I wanted to visit Sky. I was concerned that it would upset him -- seeing me, and then having me leave him instead of bringing him home. That he would be agitated afterwards. That he wouldn't understand the masks and the no touching. That it would just be too hard on him.

I decided to wait, and get a report from the facility as to how other residents were handling these strange new visits.

The report came a few days ago -- people were enjoying them, and there didn't seem to be any fallout.

Jane: Uncertainty in the Age of Coronavirus

My last two blog posts were about "Respite" in the Age of Coronavirus. However Sky is no longer on respite at the memory care center, but is now a permanent resident. Given that the world is still topsy-turvy, it seemed the best thing to do. So I signed all the papers, and wrote the big check, and there he stays.

It's lonely without him, and it's also peaceful. I sleep through the night every night now, unless I am woken up by a cat doing some kind of cat-thing, like throwing up, meowing at me, or getting into a fight. Luckily, Sayer and Emma were still up the night the raccoon tried to come in through the cat door, so I happily slept through that event. Sleep is a wonderful thing.

Jane: Respite in the Age of Coronavirus #2

The world has changed since I posted last. And so has my life. And so has Sky's life.

I am looking out onto beautiful Lake Champlain, having left our home in Burlington for our camp in northern Vermont on the Canadian border. If we're going to be on lockdown, what better place to be than out in the country, with a view of the mountains and the lake, on a road that crosses into Canada and therefore has very little traffic given that the border is now closed to all but commercial traffic? It's quiet and peaceful -- maybe too quiet and peaceful.

Jane: Respite in the Age of Coronavirus

A month ago, I looked into a respite program offered by one of our local memory care facilities. I had not had a good night’s sleep in months, and I was exhausted. I spent the morning with a staff person getting all the details and having a tour of the facility. The next week, Sky and I returned for him to spend the day and see what he thought. He went to several activities, and we had lunch together in the dining room. So far, so good.

Jane: Going, Going….

“I don’t know how to get to the Co-op.”

Sky was home after about ten minutes instead of the usual 45 minutes that it takes to walk to the Co-op, grocery shop, and walk home. He was headed out to buy supplies for our recently inaugurated “Burger Night” when we have dinner with Sayer and Emma and other friends who come by. We buy the food, and Sayer does the cooking. It’s always yummy, and something to look forward to. But, no more shopping for Sky.

Jane: Nighttime Shenanigans

Last night, in the middle of the night, Sky reached over and patted me, then abruptly drew his hand away.

“Oh, I’m sorry,” he said. “I thought you were Jane.”

“I am Jane.” 

“Oh, good.” And he went back to sleep.

Jane: Life Today

“What is this place?”

“How did I get here?” 

“Where is everyone?” 

You may think this is the beginning of a Talking Heads song, but, no, it’s just Sky trying to orient himself when he wakes up in the morning. I make coffee, and bring it to him, setting it on the bedside table, helping him into his bathrobe, and adjusting the covers as he sits up and wonders. 

Sky: AC Fall

Here in northern Vermont you ignore the changing of the seasons at your own peril.

Nature always wins. She’s the correct team to be on.

Some things you just have to do on time or you may end up miserable, like sliding across November ice on the highway.

Other things you just do, well, because they wrestle themselves to a top spot in our neuro-systems at just the right time.

Lately, I haven’t been doing so hot with either. It seems I’ve opened a stress account and a clever system to keep it topped up with automatic payments, only some of which I’m aware of at the time.

Jane: Moving Forward by Going Backward

Sky said this to me the other day, “I’m moving forward by going backward. When will it be time for diapers?”

I took a breath and said, “We don’t need to think about that yet.”

Sky: Cast of Interesting Characters

I know they’re hallucinations. I really do. How else could you explain the Stairway to Heaven? You could describe what it looks like….

…….. an elegant sparkling walkway curving graciously up and out of sight into the quiet of the Vermont twilight.

Would it help to describe the people there?

Probably not, since any description would soon veer into the “unreal” with the number of people alone. In the meantime, the Stairway keeps steadily disgorging more people, just like the sidewalks of New York.

I want to tell you about these creatures.

Sky: Ha Ha Ha Lu Cin Ay Shuns

Jane: I think people would like to know about your Hallucinations. I would, anyway.

Sky: Well, it was a big surprise when they came to me. I didn’t really know what was going on. And there are different kinds of Hallucinations. The simplest kind is when I see something in a rock or a mountain or a cloud and say, “Oh, Look! There’s a dog and a puppy playing in the sky!”

The more complicated kind is when they move.

Sky: My Spiritual Life

Note from Jane: Sky and I recently attended the Dementia Action Alliance conference in Atlanta where we were co-presenters (with Linn Possell) of a workshop entitled, "Nurturing a Dementia-Friendly Spiritual Life." These are the words that Sky read at the beginning of the workshop.


What I believe…..a work in progress